Social media can alter research priorities, study says

Apr 27, 2011

Widespread demands in Canada for clinical trials for a controversial treatment for multiple sclerosis show the growing power of the Internet and social media to influence research priorities, according to a paper published today in Nature.

Paulo Zamboni, an Italian surgeon, suggested in 2008 that MS was not an autoimmune disease but rather a vascular disease caused by blockages in the brain. He proposed unblocking the veins by mechanically widening them – what he calls the "liberation procedure."

His hypothesis got little public attention, except in Canada, where more than 500 Facebook pages, groups or events devoted to the theory have been created with tens of thousands of followers. A poll shows more than half of Canadians are familiar with the theory. Stories about it have appeared in the media almost weekly since The Globe and Mail, a national newspaper, wrote about it in November 2009 and it was featured on the CTV public affairs program W5.

Researchers at Memorial University in St. John's, Nfld., and St. Michael's Hospital in Toronto note the reports have sparked a national debate about whether publicly funded trials should be conducted and whether MS patients should have immediate, publicly funded access to the vein-widening treatment known as venoplasty.

This is despite the fact that virtually none of the country's MS physicians and researchers, nor the Society of Canada, have advocated either, and several studies have failed to replicate Zamboni's original findings.

"Indeed, the case indicates the unprecedented pressures scientists, politicians and funders worldwide can now face to alter research priorities even in the absence of credible scientific evidence," the authors wrote.

The paper's lead author is Dr. Roger Chafe, director of the Janeway Pediatric Research Unit, which conducts clinical and applied health research within the Discipline of Pediatrics, Faculty of Medicine at Memorial University. His co-authors include Dr. Arthur Slutsky, vice-president of research at St. Michael's Hospital, and Dr. Andreas Laupacis, executive director of the hospital's Li Ka Shing Knowledge Institute.

The authors said that in this new environment, researchers and clinicians need to engage more actively with the public to articulate the importance of science in determining the benefits and harm of novel treatments – and to ensure that patients' concerns and priorities are heard.

They said unconventional and unproven treatments have long been proposed and tried for many terrible diseases. "Now tools such as Facebook and YouTube make it considerably more likely that patients learn about such therapies, without necessarily learning about their potential limitations."

The authors wrote that a clear lesson from the Zamboni example is that the traditional approaches for communicating scientific findings to the public and policy advisers such as reports, briefing notes, news releases and news conferences, are insufficient. "When patient groups are using social media to advocate and mobilize, scientists must employ similarly effective tools to communicate."

More effort are needed to improving the scientific literary of the public, politicians and the media, the authors wrote, and to engaging a public that is no longer deferential to experts.

Explore further: A two generation lens: Current state policies fail to support families with young children

Provided by St. Michael's Hospital

not rated yet

Related Stories

Canada needs a policy for rare disease treatment

Jul 12, 2010

Canada needs a national approach to funding drugs for rare diseases and can learn from other countries, states an analysis article in CMAJ (Canadian Medical Association Journal).

Discovery could impact the treatment of autoimmune diseases

Aug 19, 2010

The internationally-renowned scientific journal Immunity, from the Cell Press group, publishes online today, and will publish in its August 27 print issue, the results of a study conducted by a team of researchers led by ...

Recommended for you

Scholar tracks the changing world of gay sexuality

Sep 19, 2014

With same-sex marriage now legalized in 19 states and laws making it impossible to ban homosexuals from serving in the military, gay, lesbian and bisexual people are now enjoying more freedoms and rights than ever before.

User comments : 1

Adjust slider to filter visible comments by rank

Display comments: newest first

ironjustice
not rated yet Apr 28, 2011
Quote: This is despite the fact that virtually none of the country's MS physicians and researchers
Answer: This is a perfect example of how EVEN WHEN there is SUBSTANTIAL evidence based medicine a SMALL group of physicians and researchers can CONTROL the whole of the medical profession. In Canada there was a 'grassroots' movement to spread the information / EVIDENCE of the outcomes of Dr. Zamboni's hypothesis. Those in the 'profession' of treating those with MS seem to REFUSE to accept IN YOUR FACE evidence which should make OTHERS in the medical profession to wonder to themselves what kind of dogs are they laying down with ? But it seems those IN the medical profession are pretty much collectively dogs as evidenced in this study. The study clearly shows the vaccine causes there to be live virus in the saliva of those getting vaccinated but the medical profession REFUSES to address the obvious danger.
"People Recently Immunized Against Shingles May Transmit Herpes Zoster"